MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Thursday, 31 December 2015

Today I had the last appointment of the year with a nice nurse at our GP practice - and now I can hear! I've spent the festive season in a cloud of unhearing because of wax in my right ear. It's been a good experience, in a way, in increasing my empathy with the many who are "hard of hearing". It's extraordinary how stereophonic hearing enables one to pick out conversation against background chatter. It was hard for our guests, however, as Jane tells me my speech was more garbled than normal! (Correction: it was affected.)

So I'm very grateful to Holly and my practice who still provide this service. It's not complicated of course. Just a matter of lubricating the lughole with olive oil for a week and then a visit to the professional to flush it out in five minutes. All free on the NHS. Apparently, however, in many places this simple procedure is not funded anymore. I'm told that to get your ears syringed in Oxford would cost you £70-80 - unless of course you go to A&E and have three-month wait.... And what about that other common condition, varicose veins? Oh no, you can't get them dealt with on the NHS anymore. Wait until they're open and weeping, and then we'll do them. Otherwise go private and pay £1000.

So much for the £ billions for the NHS the government trumpets so loudly! (By the way, have you noticed that their stock response to any awkward question is not to answer it but to spout some large monetary figure which is meant to impress us? And naturally it sounds impressive to us ordinary tax-paying mortals, not being among the 1,826 billionaires in the world [i.e. with wealth of over $1000 million].)

So much for the founding principle of giving treatment free at the point of use! Yes, I know it's already been eroded at the edges, with prescription charges, dental charges, road accident charges and so on. And we already see the negative effects, with people self-medicating and neglecting their dental care until it's too late. But it is clear that, whether by intention or not, the effect of government policies is to shrink further free NHS treatment.

Which leaves one perplexing question to answer. What is happening to the £ billions allegedly being poured into our National Health Service? Is it being spent on hugely expensive experimental operations, or drug regimes with hugely costly pharmaceuticals? Or on paying the interest on the legacy of foolish public/private partnership initiatives? Or on administrators called in to sort out yet more doctrinaire reorganisation? Or prodigally buying in agency staff because we don't pay those we have the wage they deserve? Or is it simply because cantankerous old crocks like me are surviving too long and costing too much?

One encouraging piece of news on Christmas Eve concerned the number one selling song in the Christmas charts. Here's what two of the Greenwich and Lewisham NHS choir had to say about the news that they had topped the charts; they're a physio and a doctor: Thank you from the choir. I think they're right, that their popularity reflected how much the NHS and NHS staff are appreciated and loved. The NHS is one of the best things about this country.

And here's the song itself - which even cantankerous old crocks can enjoy: The NHS Choir sings "A Bridge over you". The choir's aim was to support the hard work done by doctors, nurses, midwives and many others in the NHS, with proceeds set to be donated to a selection of charities including Carers UK and mental health charity Mind. At the end of 2015, I'm going to say a huge thank you to everyone in the NHS. I know you're in it for the last of those three initials - and you ought to know that 99.9% of us appreciate the long hours you work and the awesome skill and care you show us. Finally, looking forward to 2016, I hope and trust that the wedge will not be pushed in any further, and that the government will give you the recognition and reward you totally deserve. Happy New Year.

Sunday, 6 December 2015

There are a handful of us in
Oxfordshire who have Primary Lateral Sclerosis, the slowest and rarest type of
MND, and, I suppose, there's an equally sparse distribution nationwide.In fact its pathology, the way it
develops, is so unusual that the experts aren’t agreed on whether it is truly a type of MND or an entirely
separate condition.Anyway, that means
that it is a Cinderella of MND research.In Oxford we are lucky to have a concentration of MND expertise,
that PLS is not neglected, and is a hub for understanding the condition.I believe the idea of PLS Study Day
originated with Professor Martin Turner; it was certainly organised by the Oxford MND
Centre.

So on Friday 23rd
October about 120 of us – professionals, researchers, carers and people with
PLS – gathered at the Oxford Spires Four Pillars Hotel on the Abingdon Road, to
hear mercifully short presentations from our home team and from some “away”
experts.“Mercifully” – not because they
were boring, far from it, but because my attention span is limited.We heard about the characteristics of PLS –
that was reassuring as I learned I wasn’t such a freak after all, but rather my
symptoms and the way they progressed were pretty characteristic; we heard about
what MRI and MEG scanning showed up, and a bit about genetics.What was most obvious was that a lot of very
sharp minds were focused on the condition.

After a rather good lunch
and the keynote lecture given by Dr Mary-Kay Floeter, the world’s
leading specialist in PLS, based in Maryland, USA, which was brilliant,
the focus switched from research to management, and again the home team led in
this.It was informative, practical and
helpful.All was well until Rachael Marsden, the Centre Coordinator, talked about a new smart phone app called Sex Diary, of which she showed a
discreetly blank screen.As is the way
with PLS, the collective risible nerve was tickled and only with difficulty
pacified.Both the morning and afternoon
sessions ended with patients’ questions answered by a panel of the experts.

It was an exceedingly good
day, not least because of the opportunity to meet many others with the same
condition with similar but different stories to tell. As we all know it helps to know that you’re
not alone; and it helped to have explained what’s happening inside us. It was also brilliant to discover how many
people are interested enough to devote their lives to studying the disease and
to caring for us.

I have been reminded indirectly by a lovely friend over the pond that I've not posted much about what I'm up to. So here first is something about my smart super wheelchair.

You may remember that before the summer at the MND Clinic I was enquiring about hoists in cars and the fab Jenny Rolfe exceeding my hopes.I don’t want to bore you with a long story,
including my miscalculations.

With the help of our local MNDA, I
eventually chose an Invacare TDX Neuro Chair, with the central drive wheels,
for ease of manoeuvring round the tight corners in our house, and also with a
riser.It’s actually not so
good for reversing into my lift (it does wheel-spins - not good for the carpet!), but over all it’s a nifty machine, and the
grandchildren enjoyed going up in the world.And it is a surprisingly useful facility, as I found on Friday 23rd October at
the excellent PLS study day in Oxford (see next post).

Then it’s been a matter of choosing
the car and the hoist.We’ve long liked Skodas
and the Yeti looked as though its boot opening was high enough to take the
wheelchair with its back tipped down.We
supplied all the dimensions to the dealer and the hoist fitter who breezily confirmed
that it would be fine. The full weight
of the chair was 148 kg in all; the BrigAyd hoist was said to be man enough for
150 kg.So all looked good.

Well, it was – to a degree.When we got to the dealer’s to pick up the
car complete with hoist, the fitter asked us how heavy the wheelchair was and
he sucked his teeth and said, “You really need a 200 kg hoist.This is very slow.”Actually, to get the chair in you have to
remove the footplates, the armrests and the headrest (which I guess come to
about 15 kg), as only without them can you get it in – so it’s quite an
operation both before loading and after unloading.That means it would be quite unsuitable if
you’re on your own.I suspect another chair might be more streamlined and less complicated for embarking and
disembarking.

The Yeti itself is a lovely
vehicle.Ours is petrol; so no risk of
the VW diesel wheeze!We’re a bit
surprised how much room the hoist and wheelchair take up in the capacious
boot.I suppose no solution is
perfect.However we’ve already enjoyed
the increased freedom that the imperfect has provided!So, all in all, we’re pleased and look forward to its coming into its own in the spring.

Tuesday, 1 December 2015

In July Breeze Radio reported that our local South Central Ambulance Service was spending up to 10 hours a week appealing unnecessary speeding fines, because the speed cameras failed to pick up blue lights. "The ambulance service which operates across Hampshire and Berkshire received 3,306 speeding tickets in 2013 to 14. The fines given to South Central Ambulance Service amounted to £330,600."

(Photo: BBC)

Then last week came this extraordinary news, that it could now face a £1M fine for failing to meet targets. How nonsensical! This service which covers four rural counties has its funding cut and then is threatened with having a chunk of that precious funding removed. No one seriously doubts, surely, that the paramedics do their level best to reach patients as fast as possible - even exceeding speed limits, blue lights flashing? No one who has been on the receiving end of their care. Of course, everyone is aware of local stations having been closed in the pursuit of "rationalisation", as the whole trust was an amalgamation of four services ten years ago. The BBC reported:

'South Central Ambulance Service (SCAS) could face a £1m fine over its poor performance, a trust boss has said. The service has been given a penalty notice for not meeting the eight minute response target for life-threatening emergencies. Sue Byrne, SCAS chief operating officer, said: "We work hard not to be in this situation. It isn't acceptable when we don't reach patients in time." It is now working to an action plan to improve to avoid the fine being levied. Ms Byrne said: "The amount is down to the commissioners, but it could be £1m. It will have to be paid if we don't improve. "It's a very challenging environment." Low staffing issues have also been highlighted as a concern to be addressed by the service. Its ambulances would need to reach at least 75% of life-threatening emergency calls in eight minutes by the end of the year for the penalty to be lifted. The service said it was currently reaching 72% within the time target. SCAS serves Berkshire, Buckinghamshire, Hampshire and Oxfordshire.'

For me it's a vivid illustration of the stupidity of the culture of targets and fines. It creates an atmosphere of fear and undermines trust which should be at the heart of health care. Let the professionals do what they want and what they're trained to do. Trust them.

Thursday, 26 November 2015

Jeremy Hunt, Secretary of State for Health, has, I hear, agreed to go (or send his minions) to talk to the junior hospital doctors at ACAS, the reconciliation service - at last. It takes a long time, it seems, for ministers to listen. So it was with a certain amount of scepticism that last week I read and tried to understand the Government's consultation document on the future of the NHS, and then filled in the response form. I found out about the consultation only after reading about a Guardian article on the subject by Ann Robinson, not thanks to the Government making it known. I received an automated acknowledgement after I'd submitted my response. I wonder, actually I very much doubt, whether any human being, besides you will bother to read it, let alone take any notice of it. Already Mr Osborne's Autumn Statement has had implications for health and social care provision in the local government settlement, which close down investment.

Anyway, here is is my response:

1) Do you agree with
our aims for the mandate to NHS England?

I disagree with a number of implications in the priorities
and aims:

1.That ‘preventing ill health and supporting
people to live healthier lives’ is only the remit of the NHS. If other
budgets are cut, e.g. education and social care, than that aim cannot be
achieved.

2.That the present GP system does not provide
good 24/7 care. As a patient with a chronic illness, this has been far from
my experience. This aim appears to militate against small GP practices.

3.Defining as ‘long-term’ a mandate lasting ‘three
or more years’ invites the possibility of continual uncertainty and upheaval
to the service. It needs guaranteed stability.

I would question also the assumption that the patient knows best
implied in the priority: ‘People
should be given more power and control over the care that is provided to
them’ whilst agreeing that it should be that ‘services are arranged around
their needs and they are supported to manage their own health.’

I agree that the mandate should be
clearer and more accessible to the public.

2) Is there anything
else we should be considering in producing the mandate to NHS England?

Clarity and accessibility means avoiding language
incomprehensible to the public, such as: ‘in-year deliverables and metrics to
measure progress’ whose meaning eludes an English graduate.

3) What views do you
have on our overarching objective of improving outcomes and reducing health
inequalities, including by using new measures of comparative quality for local
CCG populations to complement the national outcomes measures in the NHS
Outcomes Framework?

The aim of increased transparency is a laudable one, but
it needs to be accompanied by increased trust, particularly of health professionals.
The aim of delivering equally good service nationwide is also clearly
desirable.

There is a danger in this target-driven objective of
unfairly stigmatizing skilled professionals in challenging situations and
driving them away from where they are most needed.

There is a further danger of diverting professionals from
their primary calling of care into a culture of form-filling. This is
counterproductive in the pursuit of excellence.

There is also a danger of league tables being used as
ammunition in political argument, which ultimately demoralises rather than
encourages. This is the stuff of bad management.

4) What views do you have on our priorities for the health and care system?

In headline terms, your priorities are ‘motherhood and
apple pie’

You want to create a healthier society, particularly
focusing on younger people. However, this seems less a function of the NHS
than of Education and recreation.

Dementia care and research is clearly an increased
priority. I am glad the government wants to put effort into those – as well
as other areas of mental health. The neglect of mental health ought to be
redressed; but this will need considerable financial investment both in the
NHS and in community social care.

Transparency and simplicity from the patient’s perspective
is desirable. However the security of digital records also needs to be
paramount. The government’s principle should be to rein back on centralised
record-keeping, rather than extending it. The citizen’s privacy should
normally trump efficiency. Retelling one’s symptoms is a small price to pay
for individual liberty.

However, creating new rights, such as the ‘right to a
specific named GP’, runs the risk increasing the burden of litigiousness
surrounding the medical profession as does the comparison of the health
service with the airline industry – with the possibility of suing for late
appointments for example. The healthcare industry is entirely different from
a commercial enterprise, and should not be shoehorned into becoming one.

Whilst I am in full agreement with the aim of preventing
‘avoidable ill health and premature mortality’, I think the assumption that
increasing longevity is a desirable aim should be questioned. Officiously
prolonging life is not a great good and should not be ‘a metric to measure
progress’. Good end of life care, however, should always be a top priority.

5) What views do you
have on how we set objectives for NHS England to reflect their contribution to
achieving our priorities?

As already indicated, I have some reservations about the
possible implications of where the objectives are specific. Otherwise they
seem general enough to be open to whatever interpretation is required by
policy makers. I do notice the final objective for the NHS to make money, or
to be involved in its generation.

Finally it needs to be said that this consultation process
is particularly opaque. The consultation document is not easy to follow, what
the questions are asking isn’t obvious and where to send this response form is equally unclear. You could for example simply say, ‘Thank you for taking the
trouble to complete this form. Please now send it to mandate-team@dh.gsi.gov.uk.’

Monday, 12 October 2015

There was an unusually arresting interview on BBC Radio 4's Today Programme on Saturday. After a report by John Simpson (1 hour, 30 minutes into the programme) on Russia's activities in Syria, Justin Webb interviewed the former ambassador to Bahrain and Syria, Peter Ford, who after retiring from the Foreign Office went to work as UN representative for refugees in the Middle East until 2014. he had just returned from the area. He should know what he's talking about - and, it seemed to me, he did.The interview so struck me that I transcribed it in full (you can listen to it here - after 1.30 in).

Do you think it’s fair to think of the Russian action bringing things to a head in a way that for all the short term costs might in the long term be a good thing?

Yes, I think that the Russian action is extremely positive. As John Simpson said… the Assad government had been on the ropes; a few months ago it had been haemorrhaging young men, who incidentally have been flocking to Europe, being unwilling to be conscripted. The Syrian army was down from a maximum earlier of about 300,000 to 80,000; it was on the ropes. The Russians have come in to redress the balance. And NATO, instead of sounding petulant and churlish, should actually be grateful to the Russians who are exercising some adult supervision; and what is happening is actually grist to the mill of Jeremy Corbyn who argues that NATO has lost the plot and is in fact often a risk to British security.

But in what way though could it be a long-term solution for Assad to be bolstered, because John Simpson made the point that he is more powerful in the short term, but in the long term all this does potentially is put off the day when he has to go and Syria has to be sorted out?

Oh, I totally disagree. Assad does not have to go. Let us not be brow-beaten by David Cameron repeating this mantra. I was in Northern Jordan a few days ago: I spoke to a young refugee, a teenager, a girl. I asked her, “Who do you blame?” She said, “We blame them all. We blame the jihadis for coming to our village and forcing us to flee - and we blame the government for not being strong enough.” Not strong enough! Many Syrians have this grievance against the government; so the government can hardly be blamed when it does try harder and now, with Russian support, is more likely to prevail. The choice - (Interviewer tries to interrupt) - I’m sorry, the choice cannot be shirked. It’s Assad or the deluge. NATO leaders need to address this question, and answer it to the people, like me - the voice of the ordinary man. I’m afraid we’re not getting this from the Labour Party in Britain. I don’t know why they’re nervous about tackling the government on this, because this actually a point of weakness in the government’s story. They’re not answering, “Who will replace Assad?”

Yes, but they’re nervous about saying they support Assad, and that Assad is the long-term solution because he has murdered so many of his own people, and they know, or they suspect, that he is such a divisive force, because of that in sectarian and political terms, that he could not be a realistic long-term leader of Syria.

That’s simply untrue. There’s every prospect that things could return to the status quo ante if the military campaign of Russia and Syria -

Really, even after all the barrel bombs and the killing?

Yes, he’s never going to be popular with everybody, but which Middle East leader is? The truth of the matter is that Assad is supported by a good 40% of the Syrian people. That is more actually than voted for David Cameron.

Are you seriously expecting now that following on from the Russian action and if this is bringing things to a head on the ground in Syria and indeed in the air over Syria that there is a serious diplomatic volte face now in the West and that people follow what you’ve been suggesting this morning as a serious prospect in diplomacy?

No. That would be too much to expect, but what is realistic to expect is that the West should pipe down, take a deep breath, let the Russians get on with it, NATO should continue to do what it can to fight ISIS, but it should not undermine the one force with boots on the ground, which, as John Simpson said earlier, is the only one likely to prevail against ISIS. It is totally shambolic to have a policy which is mutually contradictory.

You talk about boots on the ground. John as you say mentioned it. There’s no realistic prospect of Britain putting boots on the ground and there is occasionally discussion in America about the options that it might have had in the past for doing it and more discussion in the last few days. Is it realistic? Is it too late now for outside powers, not just in the West, but other outside powers, to intervene themselves, possibly with the UN, now that the Russians seem to be on board with some kind of action? Is that realistic or simply not?

No, I’m afraid that is not realistic. Western powers have impaled themselves on this policy of calling for the downfall of Assad. Anyhow it’s probably a good thing that they not put boots on the ground. But they can help, by, for example, lifting sanctions on the Syrian economy which penalise only the poor Syrian people. This is one reason why so many are fleeing Syria - the Western sanctions, about which we never hear a word. Well, at the end of that admirably long interview I had a number of thoughts. One was how refreshing it was for the BBC to have had the courage to allow another voice from the government party line, which, Peter Ford is right, we do hear repeated like a mantra. It's like a PR-generated slogan - if something's repeated enough, people will come to believe it. Another was how very undiplomatically frank and outspoken this former ambassador was. I should imagine it did his career no favours. But hopefully there are still those within the diplomatic service who tell their political masters the truth as it is. And finally I wondered whether any of our political representatives would take a blind bit of notice of what is an admittedly inconvenient but patent truth, and be humble enough to confess we've got it wrong again. The story we hear so often is not the whole truth. What is true is that thousands have died and millions have lost their homes - and we are not helping.

Tuesday, 6 October 2015

No doubt by now my English readers are recovering from Saturday's experience of cold turkey so heartlessly administered by our Australian cousins, and the owners of ITV are vainly trying to persuade advertisers that the viewing figures for future fixtures will be unaffected. And meanwhile some women are refraining from reminding their dearly beloveds that, after all, it's only a game.

The Rugby World Cup, anticipated as the next great sporting event in the country after the Olympic and Commonwealth Games, already shows signs of going the way of all flesh. I suppose the consolation for the RFU is that they have already sold tickets for the potential "hot" matches at vast prices to corporate clients and individuals. The best hope for them and the broadcasters must be that at least one of the home nations comes good and so preserves some great British enthusiasm for the whole show.

The famous tackle on Jono Lomu in 1995 (AP Photo/John Parkin)

Meanwhile it was all put into perspective for me by Miles Pilling who's in the middle of raising cash and awareness for MND with brilliant photographer, Cristian Barnett (26 Miles 4 MND). Miles, like me, has the PLS form of MND. I spent a couple of hours a few weeks ago on a photoshoot with them for their project. He sent me a link to the story of Joost Van Der Westhuizen. I did know about this legend of South African rugby, their scrum half in the World Cup winning team celebrated in the film, Invictus. The championship took place in 1995, a year after Nelson Mandela being elected president of South Africa, and the alliance between Mandela and Francois Pienaar, the team captain, did much to heal the rift left by apartheid.

Van Der Westhuizen's first symptom occurred seven years ago, but it was not until 2011 that he was finally given the diagnosis of Amyotrophic Lateral Sclerosis (ALS), the commonest, rapid form of MND, with a prognosis of two to five years. Last night I watched a series of YouTube clips (a documentary and some interviews) which vividly and painfully illustrate the nature of the disease. Early on he talks about about his determination to fight the disease and to set up a foundation mainly to provide care and facilities for sufferers of MND (the J 9 Foundation) - 9 being the scrum-half's shirt number. Here are three of the clips: A Life of Two Halves, with Jim Rosenthal, Interview with Dr Mol (South Africa), The Rugby Show.

At home with his rugby memorabilia (Gallo Images for ESPN)

I ended by reading an article by James Peacock for BBC Sport, Joost Van Der Westhuizen: still fighting on his deathbed, which, despite its sensationalist headline, is well worth a read. At one point he reminded me of my co-author of I Choose Everything, Jozanne Moss, also a young parent of a boy and a girl, when he says, "'But I know that God is alive in my life and with experience you do learn. I can now talk openly about the mistakes I made because I know my faith won't give up and it won't diminish.

'It's only when you go through what I am going through that you understand that life is generous.'"

You do realise that even for an outstanding sportsman such as Joost Van Der Westhuizen there is much more to life than the glamorous and lucrative world of professional sport - there's his family, there's the gift of being alive, and there's God. There are more important things than winning. There's living.

(PS Apologies for the malfunction of the link to the good BBC article. My fault. It now works.)

Monday, 14 September 2015

What an interesting weekend on the domestic political scene! Great rejoicing among Corbynistas as their man was elected as the Leader of Her Majesty's Loyal Opposition. It's a very important role. There was a helpful blog-post by theologian Ian Paul: Why Jeremy Corbyn is just what we need, in which he argues that "there are lots of reasons why anyone concerned for truth, justice and Britain’s long-term welfare should welcome Corbyn’s appointment, as it challenges some key features of the current political scene." He suggests that despite the media's prejudging assault on him and some bonkers policies he might provide just the shake-up or wake-up that Westminster politics needs. It's certainly true that the majority of the population feel alienated from politics and voiceless, despite the proliferation of mass communication. On the other hand one of my Labour-supporting friends believes he's a danger to the country and "unfit" to be leader, "let alone PM".

All pictures from BBC website - note the sample of our bumper apple crop in the foreground

Then on the Friday there was the debate in the Commons about assisted suicide. Jane and I gained a certain amount of opprobrium (and friendly comments) as we were interviewed by the BBC's remarkable Caroline Wyatt and featured quite a bit on radio and TV. We are sometimes mistakenly regarded as campaigners. The truth is that we are just two individuals who will say what we think about the issue when asked. And like anyone who has been associated with MND we also understand the dilemmas and pain of terminal illness; we realise what a complex issue it is. There were two points in the day when I thought proponents of the Bill were quite illogical. One was when Lord Carey (retired Archbishop) cited Tony Nicklinson as his prime example of why the bill was needed. The bill would have done nothing to help Tony, whose prognosis was more than six months and who would have been incapable anyway of self-administering a lethal dose. The example illustrated in fact the direction that supporters of the bill hope to take it: to extend it to those who are not terminally ill and to legislate for others (medical professionals) to take life. It implies the beginning of euthanasia. Which is why I am glad it was so resoundingly defeated in the vote.

The other thing I noted was when Rob Marris was proposing his bill, near the end, he said, "I do not know whether I would, if I had a terminal illness and a prognosis of less than six months, but I and many others would find it comforting to know that the choice was available—to have the option of choosing a dignified and peaceful end at a time and place and in a manner of my own choosing at my own hand." I couldn't divine why this principle should be limited to the last six months of life. We none of us know when we're going to die, but this doesn't stop us from living full and fulfilling lives. To say, "If only I could choose my time and manner of death, I'd be happier," seems to me illogical and immature, and a carte blanche for suicide. However, maybe I'm not entirely logical to say I understand and would not condemn someone who felt desperate enough to take their own life....

Tuesday, 25 August 2015

For a change, something a bit lighter - but not less important for all that, since such times take on a special significance when you have a chronic deteriorating condition.

Last week we returned from a week away with all our family. They're all busy people; in fact one of them is in the throes of completing his master's dissertation. So their giving up a week of the year to spend in the company of Jane and me means a lot. Not that we don't have fun together, but a wheelchair grouch imposes limits on what can be done.

We stayed in a large house in mid-Devon which Jane had found through the New Wine magazine. It was in reach of her parents and so we were able to call on them - which the great grandchildren enjoyed. The weather was of course mixed - but never bad enough to prevent us doing what we wanted. Not far away was Dunkeswell Airfield from where on the Saturday a continuous stream of sky-divers flew and gave us a grandstand display of their descents against a clear blue sky and even out of the clouds.

On the Monday we drove to the National Trust house at Knightshayes Court, once owned by the Heathcoat-Amory family. Our granddaughters dressed up as below-stairs servants. In the magnificent billiard room there was a series of corbels depicting fables. Near the door was this one:

Not a fable I'm familiar with, but it seems to refer to this one from the Latin writer, Phaedrus. "A donkey saw a lyre lying in a field. He approached the instrument and as he tried to strum it with his hoof, the strings resounded at his touch. 'What a beautiful thing,' said the donkey, 'but completely inappropriate, since I don't know anything about music. If only someone better equipped than myself had found it, my ears would have been delighted by heavenly melodies!'"So it is that talents often go to waste because of some misfortune (trans. Laura Gibbs). Sort of apt!

The next day we continued with the theme of donkeys, and visited the vastly over-endowed Sidmouth Donkey Sanctuary. Suppressing my reservations about how much money is donated to animal charities, I enjoyed the morning. It is free to get into and has pretty good wheelchair access (and posh disabled loos). An excessive number of photos were taken of the old ass with the sleek-looking donkeys.

Looking at my stomach explains the notice!

Silent fellowship of asses

And of more importance the girls didn't seem to tire of viewing the unexpected variety of donkeys. Then we had the exclusive use of Blackbury Camp for our picnic.

Under the greenwood tree

I mustn't forget to mention the two discoveries of our holiday. The first is the excellent Ashill Inn. Last year we went to have our final meal at Clyst Hydon's Five Bells. Now it's a bit out of our price bracket; and so we were delighted to find somewhere which suited us just as well and served excellent food. It's not stodgy pre-cooked microwaved pub grub, but a freshly cooked, locally sourced, delicious menu. Good wine list and local beers, I'm told.

At Ashill Inn

The game of Mölkky

The other is the game of Mölkky, to which one of our family introduced us. It's from Finland and it's a sort of sophisticated and longer version of skittles, but with the mölkky thrown rather than rolled. All generations could take part. Sadly my lack of coordination and muscle power meant I scored nothing when I played, but that didn't stop me enjoying it.

Friday, 21 August 2015

A week ago, when I was away on a much-needed break with my family, the media, led by The Sun, was full of the case of Mr Bob Cole, a councillor from North Wales, who was due to commit suicide on the Friday afternoon in the "Dignitas" self-styled clinic in Zurich. It was clearly a media-event pre-orchestrated by the pro-euthanasia lobby in this country. ITV had contacted me for an interview on the Thursday, but I wasn't then well enough to oblige. So I did the next best thing I could and sent a letter to The Guardian newspaper, before we left on holiday.

This was what I wrote:

Sir

I am sad to learn that The Sun has
lent its megaphone in support of what appears to be the latest salvo in Dignity
in Dying’s campaign to legalise assisted suicide.No one can fail to be moved by Mr Cole’s
suffering nor that of his late wife.However the campaign threatens to
open a Pandora’s box of unintended and dangerous consequences for those of us
who suffer from chronic, terminal or disabling conditions – and indeed
ultimately for our whole society.

Mr Cole is quoted as having “no
wish to die in pain without any dignity”.Neither do I.I have a very slow
form of MND, and although I don’t relish the prospect of dying I have
confidence that my dignity will not be sacrificed and my symptoms will be well
managed, thanks to advanced palliative care pioneered by the hospice
movement.Ironically, in our
sophisticated culture, the populist campaign is based on an immature fear of
the process of dying.Rarely is that process
easy, and as our population ages so the difficulties increase.However short-circuiting the process, which
is what Dignitas and assisted suicide offer, merely adds to fear and militates
against acceptance of the inevitable, and good dying.Deliberately ending life, also known as
killing, is no way to go.Expanding and
investing in palliative care, which is real compassion, is the better way.

The vast majority of disabled and
vulnerable people are protected by the law as it stands, and fear any change.To pass a law which admits that some lives
are less valuable or worthy of protection, as has happened wherever euthanasia
or assisted suicide have been made legal, is a thoroughly dangerous
precedent.I trust MPs resist the loud
siren-call of press magnates and listen to the voice of informed reason.Keep us safe.

Yours etc

Sadly, The Guardian, whilst making quite a thing of the event, chose not to print my response the next day. I am sorry because I think that opinion formers such as journalists and law makers such as MPs need to be made aware that euthanasia is not a good universally acknowledged - anything but.

Wednesday, 22 July 2015

I talked to a professional carer a few weeks ago. She had been caring for someone with terminal cancer to the end. After that she had been on holiday, and had met another carer, a nurse, who'd worked in Switzerland, where assisted suicide is legalised. He too had been caring for a cancer patient. The doctor had prescribed lethal drugs for his patient but would not administer them. (In Switzerland doctors aren't allowed to do the actual deed.) But the nurse was compelled to do it, although it ran counter to his conscience. I presume the patient had requested it.

However the effect on the nurse had been catastrophic. Can you imagine being forced to kill someone when your whole conscience and all your convictions forbade the taking of life? How would you live with yourself? The answer for that nurse was to abandon his vocation and to drown his guilt in a cocktail of drink and drugs. It was taking him a long time to rehabilitate himself, and the scars and nightmares will never leave him, I imagine.

Such is one seldom considered effect of legalising assisted suicide. There are always others involved. There is always some impact on their psyches. It might inure them to the event - which cannot be desirable. Or it might scar them as it did that French nurse.

A Labour MP, Rob Marris, has tabled a private member's bill in the House of Commons for 11th September after MPs return from holiday. It's basically the same old bill that Lord Falconer tried to introduce in the Lords last year, and will be fraught with the same old dangers which have restrained our legislators wisely from going down the same route as Switzerland, Belgium, Holland and a handful of US states. Open the door to "assisting" others to die and you open a Pandora's box of unforeseen consequences. My local MP rightly pointed out that, in Britain, we lead the world in palliative care. Our response to the physical and emotional pain of terminal illness must be to show compassion by extending and developing this further - not by letting people die when they most need encouragement and assistance to live. As evidence from other countries has shown, a right to die would for many be a duty to die. I hope other MPs will also fiercely resist this Bill for that reason.

There is a better way.

Being present at someone's deathbed is always momentous, but usually it is a necessary and healing part of grieving. It can't be that, if one is contributing to the death. But if one is there accompanying the dying person and sharing in their struggle to depart, there is no guilt in the memory, only a sense of a compassionate task well completed.

Two of my great friends have died within the last ten days. They were both men of faith. One died in a hospice and the other died at home. The passing to new life is never easy. It wasn't for them either, but it was peaceful. I suppose the body is very attached to physical life. Matt Redman's song Bless the Lord, O my soul was being sung as one friend died and will be sung at the other friend's funeral:

And on that dayWhen my strength is failingThe end draws nearAnd my time has comeStill my soul willSing Your praise unendingTen thousand yearsAnd then forevermoreForevermore."Whether you have faith, as my friends had, or not, a "natural death" is better than an unnatural one. Hard, but free of the dangers and peculiar consequences which accompany the intentional shortening of life.

Saturday, 27 June 2015

Last night Jane and I enjoyed an evening out in Oxford. We had gone to see one of my favourite plays, As You Like It. It was an open-air production in the courtyard of Oxford Castle, with a small company and minimal props. However, it was a clear night and the moon rose behind the castle keep, providing whatever might have been lacking in atmospheric scenery.

In case you don't know, the plot is as satisfactorily convoluted as any Shakespeare comedy, involving a usurping duke banishing his more likeable brother from court into the Forest of Arden, where other courtiers including Rosalind, the bad duke's niece, and her best friend, Celia, his daughter, and Orlando, Rosalind's would-be boyfriend, also end up.... The two women are the heart of the play (with Rosalind having the most lines of a female character in Shakespeare) and they were last night. The last time we saw As You Like It was at Stratford in the RSC production which starred Pippa Nixon as an outstanding Rosalind in 2013. She displayed all the emotional complexities of her character. So it's perhaps unfair of me to compare Laura O'Mahony's winsome and lively portrayal with such a stellar performance. Of course it did not quite match. But Abigail Preece's Celia was, to my mind, as intelligent and interesting as Joanna Horton's at the RSC - a lovely performance. This Rosalind and Celia were equally convincing bosom pals.

Photo from GB Theatre

There were some production details with which I was not comfortable. The major one was to exchange Duchesses for Dukes (both played by the versatile Clare Denton). Although the director, Edward Blagrove, explained it as one holding on to power "in a masculine way" while "the other offers an open and sharing world in her feminine guise", it somehow did not convince me. A major element of the play is how Rosalind proves herself ultimately more effective than all the men - hence Shakespeare gives her the epilogue. To replace them with a woman took away a visual symbol, and theatre is both verbal and visual. The result is that this Rosalind is made to appear somewhat light-weight. Another niggle for me was the caricature that was made of Sir Oliver, the priest. It was one of those outdated annoying TV portrayals (like Derek Nimmo in All Gas and Gaiters) which goes for cheap laughs. The play does not call for it.

BMH production of Macbeth at the castle

However, my reservations cannot detract from what was a thoroughly enjoyable evening by a talented small company of actors. (Watch out for Wayne Browne as Touchstone's bit of audience involvement!) It runs until 4th July and on the night we saw it there was still room for more audience, even though it's an intimate venue. If you've never seen the play - and even if you have, of course! - , I recommend making the trip. The weather forecast is good next week! The details are here.

Saturday, 20 June 2015

I've often referred to our excellent MND Care Centre in Oxford. It's based in the West Wing of the JR Hospital and the Centre of Enablement at the Nuffield. About a month ago I had my annual check-up there, seeing both the consultant, Professor Kevin Talbot, and the OT, Jenny Rolfe. The beauty of the place is its humanity and its flexibility. Once you're signed in, you're met by a real person, rather like cabin crew on a plane, but it's someone who has first-hand experience in caring for a person with MND, and they keep you informed about who you are going to see, how long you might have to wait (usually not long), who you'll see next and so on. It's so much better than the impersonal announcement over a tannoy or that annoying digital pinging display summoning you to a consulting room. The MND Centre's air hostesses are all volunteers - so valuable.

Mark Stone in the sort of wheelchair I hope to get

Anyway there are two points to this story. One is that talking to Jenny about fitting hoists to get electric wheelchairs into the boot of our car, she was anxious for me not to have an unsuitable hand-me-on chair and recommended a proper neuro-wheelchair with a folding back, which are now being made. She subsequently came out with an engineer to show me the possibilities. I'm now in the process of choosing and looking forward to Jane not having to lug my manual wheelchair in and out - and not having to push me whenever we're away from home.

The cyclists with the reception party outside the hospital (Photos: Lesley Ogden)

The other point is that we then learned about the sponsored cycle ride being done by the Centre's nurse, Rachael, the two consultants and a physio. They started off from the MNDA headquarters in Northampton and went via the centres in Milton Keynes, Aylesbury, Reading, Swindon ending in Oxford - a total of 170 miles, including a gruelling section along the ancient drovers' road, the Ridgeway. Since we'd been the recipients of a generous gift of tickets to Wimbledon, we felt the least we could do was to sponsor them - apart from the fact that we are continually grateful for the care I receive from the MNDA and the NHS. So far they have exceeded their target but just in case here's the Just Giving link. In fact we joined a group to welcome them back at Sunday lunchtime in front of the JR's West Wing. Quite an achievement! And they'd be back in clinic the next day. "Dedication is what you need," as Mr Akabusi used to say.